I am still a newbie when it comes to living with Sjogrens but I feel very alone here in Cape Town, South Africa as there is nothing for fellow SS sufferers to get together (website or other) and exchange products and doctors who they have found helpful.
Ben's Friends is a life line and I am learning so much but I still am stuck. So I decided to take a leap, and for the last two days I have created a Sjogrens website which is quite basic. I did it all by myself so be kind as its new territory and I am so bad with content. Thats were I am hoping if any one has time to have a look and share ideas with me, please. :) I am open and won't fall apart if you give your opinion.
I realize now that the site needed a comment part but sadly my website package did not offer it so I need to look into maybe a new package.
Kate, I think it's terrific that you are trying to lead the way for others in your area. You are also welcome to form a South Africa subgroup here on the site. In fact, you may find that preferable. In addition to being free of charge, you can also have discussions, comments, and private messaging. To form a subgroup, just click "Groups" at the top of the page and then the "add" button. If you meet anyone through your website, please invite them here as well.
I clicked the link and it showed up as 'unavailable'! I think dancermom had a great idea to start a subgroup here! You just never know, it may be a hit!
If you title a group here something like 'Sjogren's Syndrome in South Africa and/or Cape Town', when others google it, the group will come up! If you start the group, you will be notified by email every time someone joins or comments.
Thank you for this advice! It is an awesome idea and I am going to get working on this today.
I will put a link on my site to this site. So grateful, thank you :)
dancermom said:
Kate, I think it's terrific that you are trying to lead the way for others in your area. You are also welcome to form a South Africa subgroup here on the site. In fact, you may find that preferable. In addition to being free of charge, you can also have discussions, comments, and private messaging. To form a subgroup, just click "Groups" at the top of the page and then the "add" button. If you meet anyone through your website, please invite them here as well.
I clicked the link and it showed up as 'unavailable'! I think dancermom had a great idea to start a subgroup here! You just never know, it may be a hit!
If you title a group here something like 'Sjogren's Syndrome in South Africa and/or Cape Town', when others google it, the group will come up! If you start the group, you will be notified by email every time someone joins or comments.
Unfortunately my Rheumatologist said she had not heard of anything out there for Sjogrens support or organization in South Africa. For me its not the support I need (I get that here) but Doctors and products that people have found helpful.
Its a maze of Doctors I would have to see before finding the right one as I am looking for a more holistic approach. I know they out there but where??? This site hopefully will make my search easier but its still early days.
purplebutterfly said:
Good luck with this
Have you asked your doctor about a local group in your area that you could go to? Unfortunatly their are not many any where.
Good luck with your sub group, Kate. Sometimes just having a plan of action makes you feel better and I think you're bound to get some responses. I tripped across this group accidently and it has meant so much to me. Some days I respond and some days I just read. Either way it always helps. And I'm sure there are plenty of people like me who stumble across something that was meant to be and they will find your site, Kate and they will love you for it!
Kate, I wish you the best of luck. Just the same way we need each other here, I am sure others will be relieved to find you there. Congratulations on taking on such an important task!